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So one of the many things I remember from the hospital, one that I would like to forget is when we would go down for surgery, ct scans, or ultra sounds the nurses would sit my adult sized ass in a CHILD SIZED WHEEL CHAIR! which totally is not what this post is about, but I just remembered this one time when trying to shimmy my way out I actually got stuck and they had to have someone help me out. Because my ass was not meant to squeeze into a pediatric wheel chair. UGH- embarrassing memories, thanks blog post.

Anywho, the other thing I remember most about those trips in the hospital was I would be in the mini wheel chair, and Gagers would be on my lap waving to everybody we passed. I wouldn’t at look anybody we passed in the eye ever, because I hated their pitying looks it was bad enough hearing the “oh, that’s so sad and poor baby.” Really? You totally think that is appropriate to say when I can hear you? It’s not comforting to me. In fact I want to scream “yes, this is fucking sad. But would you like to know what’s worse? Pediatric cancer research sucks.”

Did you know? The federal government has made only very modest investments in research through the National Cancer Institute (NCI). For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents. To us, and the families of the 35 children diagnosed with cancer each day, it is clear that much more needs to be done to ensure access to treatment and the opportunity to fully recover.

30 freaking cents, that is all Gage is worth to them. It truly is enough to make me want to march to Capitol Hill and shove this blog down their throats. To make them see pictures of Gage make them look at his face, hear his laugh, show them that he is one amazing kid. Make them love him like I do. I’d tell them to get their heads out of their asses and do something about childhood cancer research funding. Because every baby deserves the chance to grow old.

I did something very indulgent yesterday. I hired somebody off of craigslist to come to my house and clean up Gagers room, because even though we have been in this house for… OMG, three months as of today. The most I had gotten done in there was getting his large furniture put together, clothes and toys were always on the floor. Unpacked boxes, hangers, empty target bags I hide from the Hubs so he doesn’t see how much I actually buy ***target is like mom crack, totally addicting*** and a hospital overnight bag. Just in case. But on the floor it all was, taunting me.

Everyday I would go in Gagers room and then walk right back out again, promising myself and the Hubs that I would clean it tomorrow. Promise. Finally after three months of midnight diaper changes and almost spraining my ankle over all the crap on the floor, I took action and her name is Jovita. She is an angel in a denim jumpsuit and knock off Sketcher Shape ups. It took her two and a half hours and forty dollars but it was more than worth it for me, seriously it was like a weight was lifted off my shoulders. I swear Jovita is just like the miracle worker the rest of my day was totally amazing, my hair looked super shiny, my makeup looked flawless, and I fit into my skinny jeans!

OK, that last part was a total lie. My skinny jeans don’t fit and I don’t see them fitting for a long time. I’d like to blame the girl scouts for that. Them and their stupid cookies…thin mints sandwiched between dark double chocolate chip galato. Yumm-O.

Honestly though, sometimes a person just needs to do what is right for them. Jovita was exactly what I needed. Firstly, because I am super lazy much to the Hubs dismay and secondly, because I finally got to put Gagers new race track carpet on the floor in his room instead of rolled up against a the wall. He totally loves it.

I haven’t been here in a few days. Sorry. It all just got to be a little over whelming, people have been calling and emailing me, questioning me about what I am writing. Am I sure I want to be putting so much of our lives out their for the world to see?

The answer? Yes, I want to write about it. I want you to know that even though Gage is in remission, I will forever live in fear of relapse. And that even though it has almost been seven months since Gage was diagnosed I still have daily anxiety and at least a couple of times a week I have nightmares. To add to my nightmare Gage has been having nightmares. I rush to his room because his screams are so scary and heartbreaking. I wonder if he remembers like I remember. I hug him and kiss him, and whisper in his ear, that it will all be all right, mommy is here and I love you so much. He always falls back asleep almost instantly, into that peaceful baby sleep, curled up on his belly with his diapered butt sticking up in the air. I usually will stay and pat his back, rub his chubby little cheeks, rub the curls on top of his head. Wishing our lives were normal.

YOU KNOW YOU’RE THE PARENT OF A KID WITH CANCER WHEN…

30. You have more meds in your cupboard than food
31. You can read your son’s chart better than his nurse
32. You look like you’re tan but it’s really Betadine stains
33. You and your hubby get matching stress tattoos for fun
34. You start teaching your daughter the parts of her body, and you point to her chest, and she says that’s her port
35. None of the security guards on the pediatric floor ask for your ID anymore, and you’re on first-name basis with the operating room staff
36. Medical students ask to borrow your notes
37. Your toddler refuses to sit on Santa’s lap because he’s too germy from all the other kids
38. You wrap presents and packages with medical tape
39. Your main source of nutrition comes from aspirin
40. Your child is more familiar with CT scan & bone scan pictures than the portrait studio!!!

Like this:

YOU KNOW YOU’RE THE PARENT OF A KID WITH CANCER WHEN…

21. You ask your CPA if bribe toys are tax deductible
22. You correct the doctors spelling on the chemo meds
23. You can read the doctors prescription word for word, and are asked to decipher it by the pharmacist
24. You know medical terminology better than your family practitioner
25. There are 4 new Mercedes in the doctors’ parking lot due to your child’s payments
26. The pharmacy sends your family Christmas presents
27. You get excited when there is a 15% off sale at the pharmacy
28. The local needle program comes to your door
29. You have a syringe in your purse and you’re not a diabetic
30. You have more meds in your cupboard than food.

Like this:

When Gage was first in the hospital, I would not leave the hospital; seriously you could not get me to leave. I was afraid of what could happen if I was gone, and not able to be there with him. I didn’t trust anybody for me not to be there, not the family, not the nurses and sadly enough not even the Hubs. But gradually after about a month I started to go out with the Hubs once Gage was asleep we would tell the nurses we were going to Wendy’s when really we would head out to this little dive bar in the parking lot next door to the hospital. We’d sit silently not talking to one another, he drinking the house special beer and me a bloody Mary. Lost in our thoughts and emotions.

As a married couple the Hubs and I needed those nights at the bar, just to sit and be alone outside of the hospital, where nobody knew who we were and what Gage was going through. I mean we slept, ate, showered, lived at the hospital for like three months last year; and when we slept it was in separate cots. Not very romantic or conducive for a successful relationship, I am going to be completely honest with you people, because if I can’t be honest with 10,000 of my closest friends, then what am I doing here?

I wasn’t sure if my marriage would survive Gages treatment. I blamed the Hubs for not being with me when Gage was diagnosed, because it was a Monday afternoon he shouldn’t be at work. He should have been shopping at IKEA with me, then at the doctor’s office getting the most devastating of my life. Instead he was making a living for his family to live on, how dare he! I resented the fact that he went to work for those first few weeks, even when he wanted to be with us, and I demanded he go work. Gage didn’t need both of us at the hospital, going crazy with anxiety and fear; go work. I didn’t see that he was slowly killing himself because he was staying at the hospital, not sleeping and then getting up at 5am to work and not get back to our room until 9pm that night. All I saw was he got to leave, he had a “normal” life outside of the hospital; and I resented him for it. I pushed him to leave, and yet I resented it!

We got into mad, crazy yelling fight in the hospital. When I say yelling, I mean whispering loudly so the nurses can’t hear us, and quickly shutting up as soon as a nurse walked in to give Gage medication and change his diaper. Oiy- those poor nurses, the awkwardness of it all, I get so embarrassed just thinking about. None of those nurses get paid well enough to have been subjected to some of the looks we shot at each other those three months in the hospital. Those rooms echo, too! So I am sure they heard every word we said. No matter how quiet we tried to be. I said the most hateful things to him, while we were in the hospital. Things I wish I could take back, and never have said. Things I don’t think I have ever apologized for, things to this day I wont bring up to the Hubs because I am so ashamed of myself.

This was the man I married, the same guy I promised to love and honor, in sickness and health, good times and bad yada yada yada. And the first real hardship in our married life together and I freak the ‘eff out, on the one person who was giving me the most strength from anybody. Who for the last seven years has let me get my way in every argument, never told me no I couldn’t do something or buy an absolutely unnecessary item, I sure as hell didn’t need. He has always been there for me, during the good, the bad and the ugly loving me and supporting me; and I couldn’t do the same for him.

The bottom line is, this has been the hardest six months of my life as a mother and more importantly as a wife. But I love my Husband and if Gage can fight cancer and survive then we can fight to make our marriage work. I think coming to that realization has been what has saved us. Six months later our marriage is still on shaky ground, but we are slowly building our family back up, this time stronger than ever. I don’t know a lot, but the one thing I do know is I love him more and more each day.